I'm considering switching LLMDs based upon the fact that my current LLMD is congratulating me for being "treated successfully" as my C6 peptide was negative for the first time in 2 years. She's recommended 3 more weeks of oral ceftin and then I'm done and don't need to come back for 3 months.
I still have all my original symptoms, so this just doesn't feel right to me. Please keep in mind my LLMD is considered, I believe, a very reputable LLMD. A Former ILADS President.
Does anyone else's LLMD place such importance on this one test? It seems like everyone else goes by the existence of symptoms.
Thanks for your input.
-------------------- Carol Posts: 38 | From Essex County, NJ | Registered: Feb 2007
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posted
Weird, very weird. I've never even had that test and woulnd't rely on ANY test to tell me "I'm cured."
I hope you can find a new LLMD in your area. Let me know if you need any names.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Well, one possibility is that you have killed off all the lyme, and your symptoms are due to another pathogen.
Have you been tested for HHV-6, EBV, Chlamydia Pneumonia and mycoplasma pneumonia?
These can cause similar symptoms to lyme.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I had a C6 done awhile back and it was cconsidered negative (I think it came back .39) under .90 is considered normal by most ID docs.
I recently heard that a Lyme doc considered anything over .10 positive.
I hae been getting treated even though the C6 is "negative". I say if you still have symptoms treat until you are symptom free.......
Posts: 3905 | From USA | Registered: May 2007
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Stoli,
I actually tested IGM positive #23 & #41 by the CDC standards, if you can believe that!! Even my regular MD said I had lyme.
So I went to a "supposedly" lyme literate doctor in my area, Dr. P, from Galloway Tsp., and he gave me a C6 petide test.
It was negative, and he told me I didnt have lyme, and that my knees would be hurting if I had lyme.
Thank God I went to a REAL LLMD after that! I am into 3 1/2 months of lyme treatment and doing better.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
didn't know there was any female past ILADS president. Not to be snotty, just looking for a verfication.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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To put my mind at rest I had another C6 peptide test run by a new LLMD at the same lab (MDL). It came back positive and I'm on the same meds as before. Based on those results, and the fact I still have nerve problems, stopping treatment seems foolish and I've made the switch to the new LLMD.
Who doesn't love spending another $750 initial consultation fee, right?
-------------------- Carol Posts: 38 | From Essex County, NJ | Registered: Feb 2007
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Wow, $750 that is insane. I image she doesnt take insurance-most LLMD's dont.
Is this how much most people pay for an initial visit?
And what about all the follow ups to come? Yikes.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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Angelica
Unregistered
posted
I paid $660 once for less then 20 minutes for a first appointment.
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